Thought you might enjoy another excerpt from my book, "Despite Lupus." Taken from the first chapter, currently titled, "Choose Well," the chapter deals with the burdens you feel in your life with Lupus, and the proactive approach of deciding to start living well with your disease.
Imagine for a moment the thought of living well. You might have to close your eyes to do this, since it’s a far cry from the life you might currently be living. Envision yourself doing the things you long to do, maybe things that you’ve not done since the day you were diagnosed. You can probably think of activities, feelings and emotions that you believed were long gone, indisputable casualties of the disease. Whatever those lost treasures are for you --strength, agility, confidence, or worthiness -- picture those things being restored to you as if they’d never left in the first place. Imagine the opportunity to feel whole again. Imagine the possibility of looking and feeling like yourself. Imagine the awesomeness of being hopeful.
A friend of mine was diagnosed with cancer several years ago. She was young, single and completely blindsided by the diagnosis. She spent months in and out hospitals, undergoing various treatments like chemotherapy and a bone marrow transplant, trying to rid her body of the cancer. During that time, she kept a journal, logging her innermost thoughts, feelings and experiences that she later compiled into a book. In one entry, if not several, she describes making a list of all the things she was going to do once the cancer was gone from her body. On her list were things like running, dancing, and singing, among many others. Although she was bedridden and staring death in the face, she believed she would regain her ability to live again. She never lost sight of the possibility. She never gave up hope. Today, she is cancer free, probably off running, dancing or singing somewhere. I certainly hope she is.
Try making your own list, including everything that you want to be able to do, say and feel once you’re on the road to “living well". Jot down everything you’re thinking - don't edit it just yet -there will be plenty of time for that later. Now is the time to be open and honest with yourself. Don’t be shy or reluctant about putting down things of little consequence or things that you’ve never admitted hurt to have lost. Now is your chance to uncover what it is that you miss the most about life right now. It’s your opportunity to grieve for yourself, while laying the ground work for a hopeful future.
Another friend of mine turned me on to this idea of grieving for my old self and abilities. At first I thought it would be a little depressing, but then I realized that it was one of the most uplifting and refreshing things I’d done since being diagnosed. For once, I was comforting myself, taking stock in the things that I really missed and reassuring myself that it was okay to be sad about it. More than that, it was okay to admit it. In making your own wish list, you allow yourself to come to terms with the resentment and frustration you’ve been harboring, mostly against yourself. When you allow these emotionally protective walls you’ve spent years constructing fall to the ground, you can begin to take steps toward self-awareness. And only then can the rebuilding begin. You become a cleansed, open wound, ready and willing for the healing to begin.
As you peruse your list, note that many of the items you record today may not be things you end up choosing once you’ve set out on your journey. You may find, once you’re on the road to recovery, the items listed are not of any great importance. Maybe they never were to begin with. You will have the opportunity to retool and reevaluate that list of yours many times on the road to wellness. You’ll actually get to choose what and how you do things, starting right now. Think of this step as a second chance, an opportunity to start over. You get to make decisions for once, not just follow Lupus' lead.
A fair warning, though: decisions can be hard to make. After all, wouldn’t we all like a scoop of vanilla and chocolate ice cream (in a waffle cone dipped in fudge with sprinkles, right?) Despite the fact that you will be forced to choose between things that you feel are equally as important, you’ll be the one calling the shots. You’ll no longer be at the mercy of Lupus, hoping and praying that she won’t strike up the band at the exact time that you need or want to be doing something somewhere. If you choose wisely, you’ll no longer find yourself stuck in bed on a Friday night against your will; you will have taken great care in preparing your body for that special night by going easy the few days before.
“To make Sunday satisfying, Saturday has got to slow down. To slow Saturday down, we have to control the weekdays. We have to force them to march slowly in a more stately manner.”
The choices you have will be endless, and certainly of more breadth and dimension than you have now. Think of the pride you’ll have in making good choices over poor ones. Another friend of mine was relating to me how her three-year old had started misbehaving a bit, doing the opposite of what she was asked to do. Desperate to find a way to effectively reprimand her daughter, she began appealling to the little girl’s sense of independence. They discussed the idea that the girl had the ability to make a good choice over a poor one every single day. Lo and behold, the little girl’s behavior immediately began to improve. Good choices inspire, heal and empower. They’ll change the way you look and feel, the way you view yourself and the world around you. You’ll be a changed person, a different person, a better person. You’ll feel good about who you are and what you can become, allowing you to be a better spouse, parent, child, co-worker, or peer.
QUOTE:  Paraphrased from How not to be a Messie, by Sandra Fulton